writings

Facing The Fire: what to do when you are first diagnosed with CRPS/RSD

As I have shared my journey with CRPS online I have begun to get fairly regular messages from people who are newly diagnosed with CRPS or loved ones of someone who is newly diagnosed. They all ask versions of the same question

“How do you did deal with this diagnosis? What do I need to know?”

There’s so much that wells up in my chest when I think about what this diagnosis can feel like. It’s such a complicated thing to process, you may be feeling relieved to finally have a name to the overwhelming pain you are constantly experiencing while being simultaneously crushed that the source of your pain is a rare & complex neurological disorder with no known cure. Just googling it for the first time can be incredibly overwhelming & scary.

First things first, I want to say that I am so so so sorry that you have CRPS. It’s an experience I wouldn’t want anyone to go through & it continues to be the most challenging thing I have ever gone through in my 35 years on this earth. My heart goes out to you friend. It isn’t fair, it doesn’t make sense, & it just really sucks. Period.

That being said, I don’t want this post to be all doom & gloom. This is by no means an easy thing to process & even harder to accept but if I can leave you with one overwhelming feeling after reading this post, I want you to feel empowered. I want to help you forge ahead with knowledge about your new diagnosis, tools I hope may help you, & most of all, I want you to know that while your future may look different than you ever imagined, your life isn’t over. A hard diagnosis doesn’t mean that there will never be joy, laughter, & beauty in your life. Some of this will take time & some of this will take a tenacious spirit.

You may find that you are braver than you ever imagined. Pain is one hell of a teacher but you my friend are up to the task. 

You can do this.

So let’s get started…

Educate yourself.

This task can be difficult. As I mentioned above, just googling Complex Regional Pain Syndrome brings up a barrage of swollen discolored limbs (you might see some photos of yours truly) & hard to swallow facts. I remember the dread I felt when I first began to research, it was overwhelming.

These sites are good places to start with helpful information & solid research:

RSDA

RSD Hope

Burning Nights

I truly believe understanding exactly how CRPS works is incredibly important, especially the feedback loop between your brain, nervous system, & the area/s affected by CRPS.

Understanding CRPS will help guide you as you begin to search for drs & treatments. Unfortunately because CRPS is still very rare, many of the medical professionals I have met in the past 8 years do not know very much (hence why so many of us do not get properly diagnosed) which is why I think it’s imperative to do your own research.

You are your own best advocate & the more you understand, the more equipped you are for the journey ahead.

That being said it can be daunting to read about CRPS and I think it’s important to not over do your research as it’s a lot to process (& accept) this major life changing diagnosis. Some of what you may find is from people who have very severe CRPS, so please be wary of thinking that every case you find will also be your future. Take your time. Maybe set a timer for 30 minutes & then go do something else. Your mental health is important & there’s no reason to push yourself if this research begins to make you feel more depressed.

I also encourage you to talk to your dr & ask questions. This is part of what drs offer to patients and those who are knowledgeable about CRPS will be able to help you navigate what’s ahead & choose which treatments to start with.

You aren’t alone.

You may go through a number of hard emotions after your diagnosis. Its normal to feel depressed, angry, anxious, and/or jealous of others who do not have this disorder. This is normal for anyone experiencing something hard. The key is to allow yourself to feel these uncomfortable emotions without letting them overtake you. This is where support from others comes in. Support will be paramount as you begin to process what’s happening & will continue to be helpful as you begin different treatments.

Some helpful options:

-find a therapist (especially one who specializes in chronic illness& pain)

-find a local chronic illness/pain support group. Many pain clinics offer groups like this, I encourage you to ask your dr if they know of any. There’s also several online support groups as it can be challenging to leave your house when you’re in a lot of pain.

-find an online support group. Lets face it some people with CRPS may be housebound or find it difficult to regularly attend a weekly group. Luckily there are many online CRPS groups along with online chronic pain groups & forums. There’s many on Facebook and heath websites. I have personally found a lot of support using Instagram. Finding others in a similar place can be incredibly cathartic & it can also be helpful to have people to discuss treatment questions with.

Time to fight

After your diagnosis you will most likely want to begin to work on lowering your pain, gaining better mobility/strength, and hopefully remission. Luckily there’s TONS of options for CRPS for you to try. Some may not work, some may not give you substantial relief but as you try things you will learn what works well for you & what does not. This two part post are the treatment options I currently know of:

Part One: Medications & Supplements

Part Two Infusions & Machines

Physical Therapy is an important part of CRPS & something I encourage you to discuss with your dr. The worst thing anyone can do with CRPS is to stop using the limb/areas that are affected. I unfortunately learned this the hard way when I began to walk in a weird way when my CRPS became severe enough that any weight bearing was excruciating. I ended up needing a wheelchair to decrease my pain but while I needed relief from the pain, this made relearning to walk later on VERY difficult. It took me almost a year to begin to weight bear, normalize my gait, & be able to use my wheelchair less.

I think it is important to work with a PT who is knowledgable about CRPS as its imperative that they understand that pushing someone too hard can cause flareups & create more issues in the long run. It’s ok to ask a PT if they know about CRPS and it’s OK to try a few PTs until you find someone who fits for you. I found pool therapy to be REALLY helpful. The warm water can feel good against hyperalgesia (overactive pain) along with making it easier to weight bear and move your limbs.

Train That Brain

As I mentioned above, understanding how CRPS works is really important. Part of why it is important is because this will allow you to “fight back” using techniques that help to “reroute” the CRPS feedback loop your brain has gotten “caught in”.

To begin I would first learn about neuroplasticity and chronic pain as this explains how chronic pain changes our brain.

Once you have an understanding of neuroplasticity you can begin to do exercises at home to help re-route the feedback loop. These exercises will all be based on is graded motor imagery:

Guide to Graded Motor Imagery

What is GMI?

Graded Motor Imagery

There are several great ways to work on graded motor imagery. This site explains the 3 steps to implement in to your daily routine.

I would begin by learning about Left/Right Discrimination.

This was the first exercise my first PT had me do after I was diagnosed. There’s a fantastic app I really recommend checking out. It’s called Recognise, there’s several versions depending on where you have CRPS/pain. It’s a really neat app that has several ways to work on graded motor imagery and also allows you to track your progress. There are also flashcards if phones are really your thing.

The next step is Explicit Motor Imagery.

Last of all is Mirror Therapy. This is something you can do at home and at PT. Its a really fascinating therapy and has been used for other things like Phantom Limb Syndrome. There are Mirror Boxes you can buy or you can use a Standing Mirror at home.

Tools & Tips

These are some other websites that I have found to be helpful. I’ve tried to share ones that I think will be useful as you begin to navigate your post-diagnosis life.

ER Protocol for CRPS

Dental Guidelines for CRPS

Patient Guide

Financial Resources

Disability & CRPS

Pacing & Goal Setting with Pain

I have written a number of blog posts about CRPS & chronic pain. You may find some helpful as you learn about your new diagnosis. I suggest checking the following out:

Two Part Series on current treatment options

K is for ketamine: all about ketamine and CRPS/ chronic pain management

My First Ketamine Infusion

When the road gets rougher: how to deal with a CRPS spread

Don’t let CRPS steal your identity

This is something I feel pretty strongly about, mainly because I believe how we view ourselves dictates how we operate with the world around us.

When someone becomes chronically ill and/or deals with chronic pain, MANY parts of their lives change. Illness and pain are like oil spills, they bleed into every nook and cranny of your life, even parts you wouldn’t expect. Because they affect so much of your life as well as you interact with the world, it can be easy to suddenly find your identity tightly intertwined with being sick.

I think it’s important to make sure that being sick doesn’t define you completely. Yes you have a debilitating complex neurological disorder that has changed MANY parts of your life BUT you are MORE than CRPS. It took me some time to understand how to do this, I wish someone had talked to me about it early on in my own health journey.

I hope this post has been helpful. I send you love & wish you luck on the road ahead.

You can do this. I believe in you.

xo, Genevieve

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